Dinner Conversation

Several times I’ve mentioned that Kate sometimes thinks I am her daddy. Usually, she asks, “Are you my daddy?” when she doesn’t remember who I am. On other occasions, she says something like, “Okay, Daddy. Whatever you say.” These words are less clear in their meaning. It could mean that she was teasing me when she thinks I am treating her like a child. Often I am left in doubt as to what she means.

Last night at dinner we had a conversation that illustrates how she can move seamlessly between understanding and not understanding. I can’t remember the exact words, but here’s my reconstruction of our conversation.

It started when she asked where we were. I told her we were in Knoxville where we had lived for forty-seven years. She said, “And I’ve never had a boyfriend.” I said, “I could be your boyfriend.” She said, “You’re my daddy.” Then she paused a moment to think and said, “I would say that any girl would be happy to have you as her boyfriend.” I thanked her for the compliment. Neither of us said anything for a minute or two. Then she asked asked where we were. Once again, I told her we were in Knoxville. This time I added, “And this is where our two children grew up. They were almost 3 and 1 when we moved here.” Sometimes she expresses surprise. Not this time. She just said, “What are their names?” From this point on we continued the conversation without any sign of her thinking I was her daddy. To me it was a good example of how easily her perceptions seemed to drift from one “reality” to another in such a short span of time.

A related example occurred when we had finished our meal. I asked if she wanted dessert. She said she was full and just couldn’t. I told her I felt the same way. Moments later the server approached the table and asked if we were ready for dessert. Kate said, “What do you have?” I knew then she had made a different decision, and, of course, I enjoyed the fudge brownie and ice cream with her. We’re living in the moment and loving it.

Grasping to Remember

Kate’s memory has been worse this week. When she got up day before yesterday, her memory was as bad as the two previous days. She repeatedly asked the same questions – “Who are you?” “Who am I?” “Where are we?” She didn’t express any frustration as she asked. She did so quite naturally as though she were asking someone else where they were from.

We talked without ceasing at lunch. That is unusual. It would start with one question and lead to another. For example, I had given her our names and relationship. Then I said something about our children. That led her to ask questions about them, their names, where they live, etc. I mentioned her family, and she asked me to tell her about her mother and father. As I mentioned different pieces of information, that led her to ask further questions. That meant I kept giving her more and more information. Of course, that was overwhelming for her. It was actually a beautiful conversation because she was so interested in knowing about her family. At one point, her eyes were filled with tears as I told her about them.

When we got in the car to return home, she said, “You’re probably going to have to tell me all this again.” She said she would never be able to remember. I told her that would not be a problem, that I would remember for her. I asked if she remembered the nickname she had given me. She didn’t. I told her it was “MM” for “My Memory.” She not only didn’t remember, she didn’t understand what it meant. It took a while for her to understand.

A 3-Card Day

I let Kate sleep until 11:30 yesterday morning. I wouldn’t have gotten her up then, but we had an appointment at 1:30. Here are her first words as she got out of bed.

Kate:             “Who are you?”

Richard:        “I am Richard Lee Creighton.”

Kate:             “What’s my name?”

Richard:        “Kate Franklin Creighton.”

Kate:             “I guess that means we’re married.”

Richard:        “Yes, we are.”

Kate:             “What’s your name?”

We were a little pushed for time, so I decided not to go our regular place for lunch and just get a sandwich at Panera. I didn’t tell Kate where we were going but was surprised that she asked what we were going to eat. I don’t recall her ever asking that before we have even left the house. I told her a couple of the sandwiches she usually gets. Several times before we got there (a 4-minute drive including a stop at a traffic light), she asked again what we were going to eat and if I thought she would like it.

When we arrived, she looked up at the building and said, “What’s that?” After seating her at a table and setting up her iPad, I brought her a muffin. She got started on that while I waited for the meal to be ready. When I brought her lunch, she had one tray with the muffin to her right. I put the tray with her food on her left. After she had eaten half of her sandwich, she went back to her muffin. In a few minutes, she pointed to her sandwich and apple and said, “Is this ours?” I told her it was. She took a bite or two and then another couple of bites of her muffin. Then she looked at the plate with her sandwich and again asked if it were ours. Once again, I told her it was. She finished her muffin and asked one more time about her sandwich before eating the rest of it.

Before we pulled out of our parking space, she looked at the building and asked, “What’s that?” I told her it was Panera and that it was a place to eat. She said, “Oh,” but she didn’t remember that we had just eaten there. As we drove out of the parking lot, I turned and drove by the front of Panera. She looked at the building and said, “What’s that?”

We went straight to Barnes & Noble from lunch and arrived a few minutes before the man we were meeting. I was in line to get a cup of coffee when he arrived. I hadn’t met him before. He works for the development office at the University of Wisconsin. Kate was sitting at a table working on her iPad. I introduced him to her. Then we had a good conversation. I started by asking him if he had been a student at UW. It turned out that he had not and had only worked for the university six or seven years. That led to a conversation about his past experience and happenings on the campus. That was mixed with my telling him about our own experiences there and what I had done since leaving Madison.

We talked for over an hour. Kate was never a student at UW but did work on campus. He and I made numerous references to people or events that she could not recall. In almost every instance, they were things that he must have been surprised about. For example, very early in our discussion I said that we had moved to Madison for me to get my PhD. Kate said, “Really, what in?” I mentioned that Kate had worked for the director of graduate admissions for the English department and who, coincidentally, had later married a friend of hers from TCU. She said, “Who was that?” I also said something about our going from Madison to Raleigh where I taught at NC State. Kate looked surprised and said, “What did you teach?”

This was one of those times when I thought about the little cards I carry that say, “My wife has Alzheimer’s . . .” I slipped it to him after several of her questions. I am sure that helped him understand when she asked other questions. I’m realizing the value of having them with me.

We came back home after lunch. Kate started working on her iPad but soon put it down and rested for over two hours. When I told her we would soon leave for dinner, she sat up and said, “Who are you?”  I gave her my name. She asked her own name. Then she wanted to know my relationship to her. As usual, she was surprised, but this was different. She was very firm in expressing that this couldn’t be. I asked if she would like to see our wedding pictures. She did, and I picked up “The Big Sister” album her brother Ken had made for her last spring. I sat beside her on the sofa and flipped over to the section that had some of our wedding pictures. At first, she had trouble recognizing everyone. After I identified the people, she began to recognize them in other photos though she was far from perfect. She did, however, become quite engaged with all the pictures. Her skepticism about my being her husband was completely over.

As we pulled out of the garage on the way to dinner, she asked my name and her name again. On the way, she asked where we were a couple of times. When we arrived at the restaurant, she asked its name. I told her it was the Bonefish Grill. Once inside, the hostess walked us to a table in the very back of the dining room. I followed the hostess but not too closely. Kate walks very slowly, and I didn’t want to get too far ahead of her. As the hostess and I stood at the table waiting for her, I said, “Have I told you that my wife has Alzheimer’s?” She said I hadn’t. When Kate approached the table, she looked at the hostess and said, “What’s the name of this place?” Kate didn’t understand her. Both the hostess and I repeated the name and looked for a sign on the wall, but there wasn’t one. I should add that we eat at Bonefish every Tuesday night and know the hostess. I am glad I had mentioned Kate’s Alzheimer’s.

Once the hostess left, Kate heard the toddler behind us making some happy noises. She turned around and asked her how old she was. The mother, who was holding the child, said she was three. Then Kate asked the mother, “How old are you?” The mother was taken aback and said, “Thirty-seven.” Kate said, “You’re young to somebody like me.” The woman and her daughter were seated with a group of five other women who would have been about the age of the woman’s mother. A few minutes later, I pulled out another one of my cards, walked over to the woman and gave it to her. As I sat down, she looked at me and smiled. Then she passed the card around to the others at her table.

When our server came to the table for our drink order, Kate said, “What’s the name of this place?” The server, whom we also know, looked surprised. I got another card out of my pocket and slipped it to her. Periodically throughout our dinner, Kate talked about the attractiveness of the restaurant. For her, it was just like the first time she had ever been there.

I wish I could know how you as a reader are responding to what I have written. This was clearly a day when Kate’s memory was at its worst. It is a definite sign of further decline. From my perspective, however, it was a good day. Kate was happy. She was talkative. She was inquisitive. We enjoyed our time together. It saddens me to see her so lost in this world, but that burden is eased when I know that she is happy. There is nothing I can do to change the symptoms that accompany Alzheimer’s. I can, however, see that her quality of life is the best it can be under the circumstances. Days like this reinforce my commitment to do just that.

Light at the End of the Tunnel (The Cold, That Is)

Yesterday Kate got up around 7:30, went to the bathroom and back to bed. I was pleased when I noticed in the video cam that she was about to get out of bed at 9:00. I went to her and asked if she wanted to get up. She said she did. As usual, the first thing she asked was, “Where are my clothes?” I asked if she wanted to take a shower. She looked unsure. I told her I thought it would be a good idea. She asked where she could find the bathroom. She rarely remembers. I know that she finds one if I am not with her. She must walk around until she finds one.

I went to the kitchen after seeing that she got in the shower. It wasn’t long before I saw that she was out and getting into bed. It was still early, and I know that she likes to stay in bed after her shower so I let her stay there an hour or more. While she was resting, she had a coughing spell about ten minutes. She seemed to be getting along pretty well as she was dressing and on the way to lunch. I didn’t hear any signs of wheezing then or the rest of the day.

She also got along well while we were at the restaurant. She had her usual memory problems, but they seemed worse yesterday. It started with one of the pictures of Frank Sinatra on the restaurant walls. Over and over she asked his name, sometimes within seconds. It is virtually impossible for her to retain information. We had chatted for about twenty minutes when she said, “What is my name?” She followed that with “What is your name?” After I told her, I asked, “Do you think we’re connected?” She said, “Are we married?” This time she didn’t seem skeptical the way she usually does and didn’t say anything.

When we got home, I decided to show her a TCU video on YouTube. Her brother Ken had let me know about it last week. She was fascinated to see the campus as well as some parts of Fort Worth. Like the music videos, the one we watched was followed by many others that were similar. She was well entertained and never worked on her iPad that was in the chair beside her.

After forty-five minutes to an hour, she took a break. While she was in the bathroom, I put in a DVD of her father’s family movies from the mid-1930s to the early-1940s. She was enthralled and whimpered as she watched. We were watching on the TV in our bedroom. Almost an hour later, she got up and walked over to me. She was very teary. She said, “Would you lie down with me?” When we got on the bed, she said, “I love my family. <pause>  My aunts and uncles. They’re all gone now.” I asked if she wished I hadn’t shown the video. She said, “Oh, no. I am glad you did. It just makes me sad. I said, “You must be glad to know that we have this video to remind us of them.” She said she was. I wasn’t surprised. The family movies have always been treasured memories. Of course, for Kate and for the other relatives her age or slightly older, they aren’t memories because they were taken either before they were born or when they were quite young.

While we were talking, we got a call from our daughter Jesse. We had a nice conversation catching up on her family. Kate greeted her when she called and said goodbye when we hung up. She was glad Jesse had called, but she did not participate in our conversation.

We took a break to get a bite to eat before the Super Bowl. When we got home, she waited for me to lead her to the back of the house. I said, “Would you like me to lead the way?” She said, “I could do it, but I would feel better if you did.”

She worked on her iPad for a while. Then she was tired and went to bed. I helped her get undressed and in her night clothes. She seemed especially confused. I had to tell her what to do every step of the way.

She went to bed around 8:30. I continued watching the Super Bowl until it was over around 10:00. When I got in bed, I thought she was sleeping soundly. Then I heard her whimpering. Periodically, she was shaking. I asked what was wrong. She said, “I don’t know.” I asked if she were afraid of something. She said she wasn’t. I asked her what I could do to help. She said, “Just stay with me.” That’s what I did. I gently stroked her back and talked softly about the good things we have experienced during our marriage. It wasn’t long before she was asleep, and so was I.

As I look back on the day, I don’t think there was anything she did that she hasn’t done before. Nonetheless, she seemed more like someone with dementia than she has in the past. During the afternoon, I received a phone call from a friend about our going with them to a concert in Asheville the last of May. I told him I appreciated the invitation, but I was very unsure because of Kate’s recent decline. At this point, I don’t know what to expect by then.

Confusion and Something New

Yesterday Kate and I had a nice day although it began with her not knowing that I am her husband. She got up on her own after I had played about fifteen minutes of soft music. My video cam alerted me to the fact that she was getting up. I went back to the room where she greeted me very normally. She asked about her clothes, and I told her they were on the chair beside the bed. As I helped her up from the bed, she said, “Are you my daddy?” I told I was her husband. She was surprised but did not seemed especially disturbed, just confused that she didn’t know/remember that. I decided not to make an issue of it and walked her to the bathroom where she took a shower. On the way she asked again if I were her daddy. When I said I wasn’t, she asked, “Where is he?” I said, “Texas.” She said, “Where are we?” I told her we were in Knoxville, Tennessee where we live. She looked puzzled but did not say anythng more. After her shower, I helped her get dressed. This was one of those times she wanted to do things herself but kept asking for my help.

I don’t recall our talking again about my being her husband until we were at lunch. She was in a playful mood and teased me a bit. In response to that, I said, “I would marry you again if I could.” She reacted as though that would be terrible. I said, “You wouldn’t like that?” She gave me a look that I interpreted as “Are you kidding?” Then I said, “We could just keep on living together.” She reacted quickly with a disapproving look and said, “I’m surprised you would even say that. What would your mother say?” Isn’t it interesting how powerful such feelings are?  This is coming from deep within the recesses of her mind.

In the course of our conversation I mentioned our children. She asked their names and wanted me to tell her something about them. We never got back to talking directly about my being her husband, but it became clear that she recognized that and was happy about it.

I think I have mentioned that she is sometimes confused about the words she wants to use. Sometimes she uses a word that is obviously the wrong one. Often she recognizes it is wrong and will say, “You know what I mean.” Sometimes I do know. Sometimes I don’t and say so. Other times I say I know when I don’t and hope that when she says more, I will understand.

Yesterday I was surprised when something new happened. She didn’t understand the meaning of two words I used in our conversation. The first occurred when I said that someone we saw at another table looked like a student. She said, “What’s that?” I helped her understand by reminding her (she doesn’t remember) of the time she was teacher. It wasn’t long before she asked me what the men at the next table were talking about. I told her I didn’t know, but it looked like they were businessmen. She said, “What’s that?” Then I explained what a business is.

The night before she asked the wife of the couple we had dinner with what the child at a nearby table was holding. She told Kate that it was a phone. Kate asked what she was doing with it. She explained that the child was probably playing a game. I suspect part of Kate’s not understanding what the child was doing relates to her eyesight. I can’t tell how much relates to her Alzheimer’s and how much is a result of the cataract in her left eye.

Twice yesterday afternoon, she saw her iPad and asked me what it was. I told her it was her iPad, and she said, “What do you do with it?” I told her she could work jigsaw puzzles on it and opened the program for her. She continues to be able to work her puzzles, but it is getting more difficult for her. It is like many other abilities. Sometimes she gets along fine. Other times she runs into problems.

All of these things signal how much her world and mine are changing. I can’t help wondering what life will be like six months from now but not really wanting to know.

Catching Up

I observe so many examples of “Living with Alzheimer’s” these days that I forget to document them for the blog. That’s a special problem when we have very active days as we had over the weekend. With our trip to Nashville on Saturday and a play yesterday afternoon, I failed to note several things.

One of those occurred yesterday morning. I thought it was noteworthy because I had written a post the day before in which I said that Kate almost always recognizes me as someone she knows and trusts. That wasn’t true yesterday. We were going to a play at 3:00, and I wanted us to have lunch without rushing, so I woke her about 10:30. I began by playing some soft music. Fifteen minutes later, I went in to see about getting her up. When I did, she looked at me strangely, and said, “Who are you?” I asked if she meant how we are related. She nodded yes. When I explained that I am her husband, she was surprised. Then I said, “You do recognize me as someone you know and are comfortable with, don’t you?” I expected her to answer yes, but she didn’t. Instead she said, “I don’t know.” Then I went in another direction. I said, “I am Richard Creighton, and I care about you very much. I’d like to take you to lunch. Would you like that?” She said, “Where are my clothes?” I said, “I’ve got them right here for you on the chair. Wouldn’t you like to take a shower before you dress?” She said, “Where is it?” I said, “It’s right over here. Let me show you.” Then I helped her out of bed and walked her to the shower. From that point on, everything went well. At lunch, she even used my name one time. Interestingly, I don’t recall her asking my name or hers the rest of the day.

One of the lessons I am learning is that explanations don’t seem to have the same power or effect that experience does. This is true for everyone she meets, not just for me. If I tell her we are going to have lunch with someone, she almost never knows who I am talking about. If I give her a little information about how we know them, that doesn’t seem to help. Once we are with them, it appears that she picks up more powerful clues. It’s her intuitive abilities that help more than her rational ones. I am sure that the longer we are with them, the more comfortable she feels. In an hour she picks up more information. This doesn’t mean that she remembers their names. It means she “senses” that they are people she knows and is comfortable with. The same thing seems to occur when she looks at photo albums. At first, she may not recognize some of the people. The longer she spends with the album, the better her recognition.

This discussion of recognition reminds me that she continues to have problems recognizing our house as “our” house. I noted above that she asked where the shower is. It is very common for her to ask where the bathroom is. She continues to want to follow me when we walk into the house, but not always. She also continues to confuse our house with a place we are staying while out of town. For example, after we got home from Nashville the other night, she asked if we were going to sleep here. I believe that is what she was thinking last night when she whispered my name and motioned to me to come over to her. When I got closer, she whispered, “Could you get me something to wear to bed?” I noticed that she had also closed our bedroom door. Earlier she had closed the door to the family room.

Something else that I noticed over the weekend is that she had some very talkative moments. One of those occurred Saturday night, after turning the lights out, she started talking about her mother and how much she helped other people. By itself that would not be unusual, but I was struck by some of her observations about people in general. She said that people have lots of different kinds of problems and generally don’t feel comfortable talking to others about them unless they are people they trust. She explained that her mother was that kind of person and could listen without being judgmental.

She was also talkative at lunch yesterday. Some of that involved teasing me. I said something about her birthday which is today. She asked how old she would be. When I  told her, she asked how old I am. I said, “I’m 78, but I could pass for 50.” (Joking, of course.) She laughed and said, “Have you looked in the mirror lately.”

Her appreciation of comedy has never included slapstick or farce. Yesterday we went to see Arsenic and Old Lace at one of our local community theaters. It’s a farce from beginning to end. She didn’t enjoy it. It seems like most of the local productions are musicals. She can appreciate them because of the music. I don’t think I will get tickets to another play. They demand too much of her. That’s not a great sacrifice. There are plenty of musicals.

Reflections on 2018

As we begin this new year, I find myself reflecting on the past and thinking about 2019. Over the past couple of years, I have not been as hopeful as I was in the early years after Kate’s diagnosis. I think that is to be expected. Now we find ourselves in the later stages of Kate’s Alzheimer’s. This means that Kate will continue to decline. As she does, our lives will change as well. The most notable changes in 2018 have involved her memory loss, more confusion, sleeping later in the morning, and her growing dependence on me. All of these have led to corresponding changes in our lives.

Of course, Kate has gradually lost her memory throughout the eight years since her diagnosis in January 2011. For the most part that didn’t seem quite as problematic as it became in 2018. Part of that is psychological. For example, this was the year that she began to forget both my name and hers. More recently, she has begun to have trouble recognizing me as her husband. These changes in memory didn’t make any difference in our being active in the community. We still eat out for lunch and dinner. We continue going to the music nights at Casa Bella as well as attending other musical events in the community and listening to music at home; however, the loss of my name and hers hurts in a way that the memory of others doesn’t. This is a signal that most of her memory is gone. It has a special impact when she can’t remember our names even moments after I tell her, often immediately.

Memory loss is accompanied by greater confusion. This was the year in which she forgot a good bit about our house and the community in which we live. If asked, she couldn’t tell you where we live or where she is at the moment. She often asks me where the bathroom is in our house. She doesn’t know where her clothes are kept. As I have reported, she often thinks we are some other place than our own home. Her normal pattern when we return home is to wait for me to lead her to the back of the house. She also calls out frequently, “Hey, where are you?” when she doesn’t know where to go after going to the bathroom.

The changes in her sleep have had a greater impact on our lives than anything else. Before she started sleeping so late, we were regulars at Panera in the morning. We had gotten to know the people who work there as well as many of the regulars who stop by, not to mention the friends we know from other places that might be there. It was a stimulating experience for both of us. That is all but gone now. Most of the time we don’t leave the house until time for lunch.

The last big change for Kate has been her growing dependence on me. This was the year that I began to play a much larger role in helping her with everything. I am glad that she retains a desire to do things on her own. Just yesterday, she resisted my help with dressing and extending my hand to help her from the car as well as going up and down curbs. I hope this continues a while longer, but she is gradually turning over more and more to me. The most recent big change was accepting help showering and dressing from both of our sitters. I fully expected some resistance.

I don’t know exactly what will happen over the course of the coming year. I do know that she has made significant changes in the past 6-8 months. She is beginning to behave as one would expect of a person with Alzheimer’s. I have to expect more of that in 2019 unless she reaches a plateau. Even if that happens, it won’t be forever. That saddens me, and yet, I continue to be grateful that she has gotten along so well since her diagnosis. I am also hopeful that we will continue to enjoy life and each other even if it is not in the same way as in the past.

Kate and I are not unique in not knowing what lies ahead. The same is true for each of you reading this post. Along with my hopefulness about our own future, I wish each of you the very best in 2019. Happy New Year.

Little Things and the Importance of Intuitive Abilities

Yesterday was another relaxed day and a very nice one. Even though we had no commitments for the day, I got Kate up before she was ready. Our housekeeper was at the house, and I also didn’t want to eat too late in the day. Fortunately, Kate didn’t make a fuss at all about getting up. She responded to me as though she recognized me. She didn’t ask my name or who I am. She gladly accepted my help with dressing although she did most of it by herself.

When we were ready for lunch and about to get in the car, she called to me in a whisper and motioned me to come close to her. It was like she was trying to keep someone from overhearing her although there was no one around. I walked to her, and she whispered in my ear, “What is my name?” I told her. She asked me to repeat it and then said it herself. As I opened the car door, she said, “What’s your name?” When I told her, she said, “I knew that.”

On the way to lunch, I played a CD of familiar show tunes. She sang along with several of them. I was surprised at her memory for the lyrics. She didn’t get them perfectly, but she did a pretty good job. She also surprised me as we left the restaurant. We were about to step off a curb when she said, “Take my hand.” I immediately sang the phrase “Take my hand; I’m a stranger . . .” She finished it by singing “in paradise.” I was surprised again. That’s an old song, and one that we haven’t heard in many years.

Later after we had returned home, she picked up something that belonged to our housekeeper thinking it was ours. I told her it was the housekeeper’s. She said, “My bad.” I don’t ever recall her using that expression before, and it is obviously of a more recent vintage than the old songs she was singing earlier. Once again she had surprised me.

I continue to believe Kate derives a good bit of pleasure from the puzzle pictures themselves as well as the satisfaction of completing them. She often asks me to look at a puzzle after she has finished it and comments about the colors or how cute the animals are. She has two or three that she works over and over. Both of them are pictures of kittens. One is very colorful. Kate like that. She likes the kitten in the other one. This happened several times while we were at Barnes & Noble yesterday afternoon. Her intuitive abilities are alive and well.

After dinner last night, I turned on the last of the Clemson/Notre Dame game and planned to watch the Alabama/Oklahoma game. As so often happens, my plans changed. Normally, Kate works her puzzles until time for her to go to bed. As I have mentioned before, she is encountering a little more frustration with her puzzles now. There have been a number of occasions in the past several weeks that she has simply put down her iPad and sat without doing anything. That is what happened last night. I saw that she had stopped working her puzzles and knew that she needed a break. I suggested that I find a YouTube video with some music. She liked the idea. I found a series of Andrea Bocelli videos that she enjoyed. That was followed by an old “Christmas in Vienna” concert with The Three Tenors. She watched all of it and was thoroughly entertained. That was an hour. It led to several additional videos of Bocelli with other musicians like Lang Lang and Sarah Brightman. Kate was so engaged that she didn’t want to go bed but did so at my urging.

So what about football? The truth is that I didn’t have a stake in either game, so I didn’t consider it a great sacrifice to give them up. In addition, I also enjoyed the music as well as watching Kate being so engaged. I hope that we will be able to enjoy music together for a long time. It’s a pleasure for me to live in the moment with her. It is also another example of how important intuitive abilities are to both of us. They provide moments of joy I did not expect when Kate was diagnosed.

More Signs of Memory Loss and Confusion

For quite some time I have been reporting Kate’s difficulty remembering names and places as well as her confusion. That makes it a challenge for me to convey how she is different now than in the past. Perhaps the best way is for me to say that I don’t think she is on a plateau but gradually declining with respect to both her memory and confusion. There have been two occasions in the past few days that particularly struck me. One of those occurred yesterday morning.

Although it was not a day for the sitter, I wanted her to get up before noon so that she could get ready without my rushing her. I also wanted us to have a relaxed lunch before her 2:00 appointment for a massage. About 10:00, I put on some music to help wake her. It was 10:45 before I tried to get her up. She opened her eyes when I sat down on the bed. She smiled and waved to me with her hand. I asked about her getting up for lunch. She said she didn’t want to get out of bed that she was too comfortable and relaxed. I didn’t leave her bedside. We began a conversation that was one of those I take as a sign of a new stage of her decline. Let me try to capture some of flavor of our conversation.

KATE:            What’s your name?

RICHARD:    Richard.

KATE:             No, your full name.

RICHARD:    Richard Lee Creighton.

KATE:             Say it again.

RICHARD:    Richard Lee Creighton

KATE:             Let me say it. Richard. (unable to remember the rest) What’s your name again?

RICHARD:    Richard Lee Creighton.

KATE:            What’s my name?

RICHARD:    Kate Franklin Creighton

KATE:            That sounds right. What’s your name?

RICHARD:    Richard Lee Creighton.

KATE:            Say it again slowly.

RICHARD:   Richard Lee Creighton.

KATE:            What’s my mother’s name?

RICHARD:   Elizabeth Franklin. Does that sound familiar?

KATE:            No. Did you know her?

RICHARD:    Yes, and she was a very special lady.

KATE:            (Looking surprised) Is she gone?

RICHARD:   Yes, she died 13 years ago, but she lived a long life. She was 90 when she died.

KATE:            What’s your name?

RICHARD:   Richard Lee Creighton.

KATE:            What are you to me?

RICHARD:    I am your husband.

KATE:            (Surprised) You are? What was I thinking? (joking)

RICHARD:    Yes, and we have two children. Our daughter is 50.

KATE:            How old am I?

RICHARD:    You’re 77, but you will be 78 in less than a month.

We talked like this for 15-20 minutes before I said I would be glad to help her out of bed. She didn’t want to, but she let me get her up and take her to the bathroom. While she was showering, she asked my name, her name, and the nature of our relationship. As I noted before, she asked these things without any sign that she was disturbed. She just couldn’t remember them and wanted me to tell her.

We went to lunch at Panera. While we were there she asked some of these questions again as well as “Where are we?” By the time we finished eating, she quit asking all of the questions. I don’t know that is because she remembered or she was wrapped up in her puzzles. On the way home from her massage, she called me by name.

As in one other experience like this she tended to accept that I was her husband but my telling her did not bring back any memory of that. Neither did my name. Not only that but the duration of her confusion lasted longer than usual. More subjectively, it also seems that the way she looked and expressed herself seemed like it was much harder for her to make sense of everything.

We spent two hours at home before going to jazz night at Casa Bella. During that time she seemed quite normal. She didn’t ask any names. She did ask for help with her puzzles several times.

As always, she enjoyed the evening at Casa Bella. She was somewhat more talkative and confident. When we got there, we saw the couple that we went to Flat Rock with last week. We quickly got into two separate conversations. The husband and I talked while Kate talked with his wife. I wish I could have participated in both conversations because Kate was very animated and engaged. She continued to be talkative after we got to our regular table. It was a little noisier last night, and it was harder for her to understand what people were saying. As she has done in recent situations like this, she kept asking us to repeat what we were saying. I really feel for her at times like this. She was ready to participate, but she couldn’t follow what we were talking about.

On the way home, she asked where we were going. I told her we were going to our house. She was surprised and said, “How can we do that?” I told her we were already in Knoxville. That was another surprise for her. When I asked where she thought we were, she said she didn’t have any place in mind. She was pleased to be going home. In a few minutes, she asked where we were going to stay. Again, I told her we would stay in our own home.

When we drove down our driveway, she was puzzled. Then the garage door opened, she said, “Oh, I recognize this.” Once inside she followed me back to the bedroom. She started to close the door to the family room. I told her she could leave it open, that we were the only ones here. She said, “That’s a shame.” She was looking at our house as a hotel or some other form of lodging and not our home. She wished other people could be here to enjoy it. Apart from that confusion, she seemed very normal and showed no sign that she didn’t know me.

At 6:00 this morning she got up to go to the bathroom. I went around to her side of the bed to help her as I have been doing recently. I was surprised that she didn’t sound either groggy or confused. She didn’t want my help getting out of bed or walking her to the bathroom though I did walk with her. She said, “I really didn’t need you but thank you.”

After walking back to her side of the bed, she said, “I just want to look out here a minute.” She was looking at our back yard. She said, “It’s beautiful. They’ve thought about everything.” She still thought she was staying some other place than our home. Then she got in bed. The timing of her trip to the bathroom was just right this morning. It was about two hours later than yesterday. That suits me better. I had had a good night’s sleep.

Sleep, Memory Issues, and Confusion

We had no special obligations yesterday, so I let Kate sleep a little later. When I checked on her about 10:30, she opened her eyes. I asked if she were ready to get up. She wasn’t. I got her up shortly after noon. She wanted to sleep longer but got up anyway without making a fuss. As she has done on a couple of other occasions recently, she got up, showered, and dressed reasonably quickly. It was still almost 2:00 when we left for lunch.

When she got up, she looked at me and asked, “Are you my daddy?” I told I was her husband. She was surprised. Then she asked my name. When I told her, she asked if I were her daddy again. This was like another occasion in the past few days. It wasn’t just that she couldn’t remember my name or that I am her husband. It was the fact that she asked so many times in succession. In addition, nothing seemed to jog her memory until we were well into our lunch.

She never seemed frustrated or disturbed, only puzzled that she and I were married. As we pulled out of the garage on the way to lunch, she asked again if I were her daddy. Again she was surprised when I said I was her husband. I commented on the fact that she seemed to be comfortable with me the way she would if she knew me. She acknowledged that she wasn’t afraid of me or bothered by me. She just didn’t know who I was.

When we arrived at the restaurant, I went around to her door and opened it. She said, “Richard” and pointed to her cup in the cup holder. She was asking if she should take it in. I told her to leave it in the car and then said, “You said my name.” She said, “What is it?”

It was no surprise that she pointed to the enlarged photo of Frank Sinatra on the wall of the restaurant and asked me who he is. She must have asked between five and ten times while we were there; however, she did remember that she has bad feelings about him. Before lunch was over she stopped asking my name, her name, and the names of our children. Part of the reason was that I felt as though I were pummeling her with information, and she needed a break. I think it was also a result of her having a longer experience in a restaurant that we frequent every Sunday. We talked with the hostess, our server, and another server we know. I think all of these things helped to bring back bits of her memory. A few minutes before we left the restaurant, she said, “You’re a good husband.” I said, “What makes you say that?” She said, “Somebody told me.”

We left the restaurant shortly after 3:30. In the car Kate asked if she could take a nap when we got home. I told her that would be fine but that I was surprised she was still sleepy since she had only been up less than four hours. When we walked in the house, she asked what she should do. I told her I thought she might like to brush her teeth and spend some time together in the family room. She went directly to a chair in the family room where I handed her the iPad. I went to brush my teeth. Before I finished brushing, she got into our bed for a nap. She was there until 5:30 when she told me she was hungry.

It’s not just names she is forgetting. I notice a number of other little things. For example, she asked me to tell her how to flush the toilet last night. For some time she hasn’t been flushing. I never thought about the fact that she might have forgotten how. Sometimes she doesn’t know where to put her cup when she gets in the car. She occasionally forgets where the seat belt is located though she remembers to put it on. A couple of nights ago after returning home from dinner, she walked out the back of the garage instead of coming into the house. When I explained that we were going in the house, she said, “How was I to know?”

As we returned home after dinner, Kate said, “It looks so different after dark. I’m glad I have a ‘witchie’ to drive me.” This is another instance of her getting mixed up with words. The words are sometimes unintelligible or unrecognizable. In this case she was trying to say “someone to drive me.” I said, “You wouldn’t know how to get home?” She answered, “I could get there. It was just take me a while.” This is one of those little signs of her retaining a sense of independence. It happens most frequently when she asks for my hand going up and down curbs or stairs. She frequently says, “I could do it myself. I just feel better holding your hand.”

These changes are coming about gradually but are frequent. Life is very different now than it was in the early years after her diagnosis.